Dementia Diagnosis Practices of Primary Care Physicians in ... · people with dementia. Primary...

DEMENTIA DIAGNOSIS PRACTICES OF PRIMARY CARE PHYSICIANS INBRITISH COLUMBIA: WHO KNOWS?

by

JEANNINE CROFTON

A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS

FOR THE DEGREE OF MASTER OF ARTS

in

THE FACULTY OF GRADUATE STUDIES

GRADUATE COUNSELLING PSYCHOLOGY PROGRAM

We accept this thesis as conforming to the required standard

……………………………………………………………………Marvin McDonald, Ph.D., Thesis Supervisor, Coordinator

…………………………………………………..Landa Terblanche, Ph.D., Second Reader

……………………………………………………….

Kathleen Bell-Irving, External Examiner

TRINITY WESTERN UNIVERSITY

January 2005

© Jeannine Crofton

Dementia Diagnosis Practices

ABSTRACT

Three hundred and twelve primary care physicians, working in British Columbia,

responded to a survey describing their practices with dementia patients and their families.

The decision of whether or not to disclose a dementia diagnosis and to whom, factors

influencing a physician’s practice, confidence in diagnosis, and the impact of medical

training was queried. The typical participant practiced in a Metro Urban centre, had over

10 years of experience and has taken between 1-10 hours of dementia- related training in

the past 5 years. Approximately 80% of physicians were trained in Canada; almost half of

those in British Columbia. The questionnaire was designed in cooperation with the

British Columbia Medical Association (BCMA) and geriatric specialists. Univariate (t-

test, chi-square) and Anova calculations were used to identify significant results. Almost

60% of primary care physicians are disclosing a dementia diagnosis in over 75% of their

cases. Caregivers are regularly informed of a dementia diagnosis more frequently than

patients. Physicians with more experience were associated with reduced disclosure

frequency. A smaller number of participants reported a significant result in the influence

of non- professional experience as a factor in their disclosure practice. Significance was

observed noting a difference between the influences of various factors on a physician’s

dementia diagnosis practices. Physician’s reported feeling unequally confident in their

skills relating to dementia disclosure, and consider some factors as more important than

others in how they influence their practice of disclosure.

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TABLE OF CONTENTS

ABSTRACT..........................................................................................................................i

TABLE OF CONTENTS.....................................................................................................ii

ACKNOWLEDGMENTS..................................................................................................iii

CHAPTER 1: INTRODUCTION........................................................................................1

CHAPTER 2: LITERATURE REVIEW.............................................................................5Disclosure Practices.........................................................................................................6Ethical Decision Making................................................................................................12Conceptual Models........................................................................................................13Policy Implications........................................................................................................17Research Focus and Tentative Hypotheses....................................................................20

CHAPTER 3: METHOD...................................................................................................22Participants.....................................................................................................................22Analysis..........................................................................................................................23

CHAPTER 4: RESULTS...................................................................................................24Preliminary/Descriptive Analyses..................................................................................24Hypotheses.....................................................................................................................24Summary........................................................................................................................28

CHAPTER 5: DISCUSSION.............................................................................................30Hypotheses.....................................................................................................................30Future Research and Limitations...................................................................................33Policy Implications........................................................................................................34Conclusion.....................................................................................................................36

REFERENCES..................................................................................................................38

APPENDIX A....................................................................................................................46Survey Questionnaire.....................................................................................................46

APPENDIX B....................................................................................................................13

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ACKNOWLEDGMENTS

I would like to thank Rob Hulyk, Government Liaison Manager, of the British

Columbia Medical Association for the opportunity to work together on the dementia

survey and to work with wonderful committee members on the Dementia Strategy

Project.

I would also like to thank Dr. Marvin McDonald for his patience and ongoing

support. I appreciate his ability to keep me on track when so many other important things

demanded my attention. I would also like to thank my second reader, Dr. Landa

Terblanche, who always had an encouraging word.

Thanks to my sister-in-law, Angela Fraser, for the many fresh perspectives she has

provided over the years. To my parents I send my love and affection for teaching me the

importance of an education and the value of hard work and perseverance. Special thanks

go out to my husband Jeff for his love, support and encouragement. For his unselfish

approach to parenting our children, Liam and Lexi, I will always be grateful.

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Dementia Diagnosis Practices iv

CHAPTER 1: INTRODUCTION

Professionals in every area of human service struggle with difficult issues.

Financial advisors, teachers, counsellors, and medical professionals balance decisions

they make each day. Physicians, among others, have guiding principles such as

beneficence and non-malificence as they carry out their duties with patients and families.

"Do good for others" and "Do no harm" becomes an even more difficult principle to apply

when patients have only partial insight into their condition; as is the case with many

people with dementia. Primary care physicians are the front line professionals who

diagnose and manage dementia care in the community. Despite well-established general

ethical principles, thorough training and clinical experience, dementia disclosure

practices vary significantly.

Dementia disclosure practices have been widely studied around the world. In a

recent systematic review on the topic, a group of United Kingdom researchers, Bamford

Lamond, Eccles, Robinson, May, and Bond , found fifty-nine English studies with

original empirical data (2004, p. 152). The study found continuing diversity in practices

of dementia disclosure as reported by physicians, other healthcare professionals, patients

and caregivers.

The noteworthy controversy regarding dementia disclosure continues, as it

remains unresolved. Similar discussions regarding other terminal illnesses such as cancer

reached consensus decades ago. Cancer disclosure practices received attention in the

1960's by Dr. Donald Oken, when he identified that 90% of physicians did not disclose a

diagnosis of cancer to patients (Novack, Plumer, Smith, Ochitill, Morrow & Bennett,

1979). This has changed, and in 1979, researchers were able to document regular

1

disclosure practices for cancer patients (Novack, Plumer, Smith, Ochitill, Morrow &

Bennett,1979). Researchers have identified numerous factors, including the lack of

certainty of diagnosis, few therapeutic options and concerns that giving a diagnosis will

be harmful to the patient, that contribute to non-disclosure practices for primary care

physicians with dementia patients (Drickamer & Lachs, 1992).

Dementia refers to a group of diseases often characterized by progressive memory

loss, declining cognitive function, and changing mood and behaviour (Alzheimer's

Society of British Columbia website: http:// www.alzheimersbc.org/ alzheimer.php). The

two most common forms of dementia are Alzheimer's Disease (AD) and Vascular

Dementia (VaD) accounting for over seventy percent of dementia diagnoses, however,

other common forms of dementia include Lewy Body dementia (LBD) and Fronto-

temporal dementia (FTD). “ Dementing disorders are primarily distinguished by the parts

of the brain affected and by the pathological changes occurring in brain cells” (Yeaworth,

2002 p. 29) although changes in an individuals standard daily functioning may be the

most clear indicator for the primary care physician.

Dementia is often assumed to be a natural part of aging because as people age,

they are more susceptible to dementia. Yet, dementia is not the result of aging. While

people as young as twenty have been diagnosed with dementia, the majority of those with

the disease are over the age of sixty-five (Molloy & Caldwell, 1998, p. 12). One third of

people over the age of 85 in British Columbia have dementia (BCMA, 2004, p.5) and as

the aged population increases, so does the cost to our communities.

In recognition of the personal impact on individuals and families, as well as the

effects on the growing utilization of resources, dementia-focused associations around the

world, such as Alzheimer’s New Zealand and Alzheimers Scotland, have been calling for

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practice guidelines for physicians managing dementia care. The Canadian Medical

Association published numerous recommendations resulting from the Canadian

Consensus on Dementia (Canadian Medical Association, 1999). Regarding disclosure of

dementia, they concluded that "although each case should be weighed on its own merits,

it is considered ethically preferable to inform persons with dementia of their diagnosis

(p.S7)". The Canadian Alzheimer's society amended their ethical guidelines detailing

appropriate disclosure practices for physicians in 2003 (www.alzhemer.ca/home/html).

Despite such recommendation, the Province of British Columbia, unlike most other

Canadian provinces, does not have a dementia strategy in place or some basic dementia-

specific resources, such as access to dementia drugs.

One of the main contributions of this study is to document the dementia disclosure

practices of primary care physicians in British Columbia. Quantitative statistical analyses

are useful in describing practices and determining associations between factors and

practices. Overall, this study attempts to increase discourse about the ethical and disease-

related factors that influence the dementia disclosure practices of B.C. physicians. More

specifically, it attempts to explore the difficult questions about the value of people with

limited capacity, and the commitment of our society to treat them with respect.

While many research projects are exploratory and seek to add new knowledge to

existing theories, this study is an example of applied research and can best be assessed by

its usefulness to the community. While the research presented in this study is specifically

addressing dementia disclosure issues, the larger information documented and presented

to the Dementia Strategy Project group was used as part of a larger initiative by the

British Columbia Medical Association to advocate for a coordinated dementia strategy in

British Columbia. Assisting in efforts to influence the provincial government’s approach

3

to dementia care is a useful and significant contribution of this research study.

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CHAPTER 2: LITERATURE REVIEW

Alzheimer’s disease became a part of mainstream consciousness in 1994 when

former United States president, Ronald Reagan, announced he had been diagnosed with

dementia. The Reagan’s founded the Nancy and Ronald Reagan Research Institute to

search out advancements and treatments for Alzheimer’s disease

(http://www.alz.org/Research/Reagan/overview.asp). In the years since his

announcement, Alzheimer’s disease has become a part of the collective consciousness as

people understand it affects the memory of elderly people.

This study is about the importance of communicating a diagnosis of dementia. As

primary care physicians are the first medical professionals presented with symptoms, they

play a very important role in the lives of patients and caregivers. Interestingly, the issue of

disclosure is controversial and has been for many years. Numerous researchers from

around the world have attempted to understand and clarify the issues, yet, no common

approach has been agreed upon by primary medical staff.

The literature review attempts to illuminate the reoccurring issues presented; the

research examines how often disclosure of dementia occurs and what factors are seen as

important in the decision to disclose. One issue that has not received as much attention is

the role of ethical decision-making in dementia diagnosis. This issue is discussed briefly.

Dementia diagnosis is looked at from numerous psychological perspectives,

although no one theory fully encapsulates the issue. Humanistic and existential theories

tend to most closely pull together ethical and practice perspectives.

Lastly, approaches to managing dementia are discussed in the hopes of identifying

what proactive measures have been taken in other Canadian provinces. This is also a

discussion of the approach British Columbia has adopted, the possible inclusion of

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psychologists as a part of the funded health care approach as well as what further needs

exist.

Disclosure Practices

Dementia disclosure practices by primary care physicians vary. Those who oppose

disclosure cite concern for the welfare of the patient. Researchers Rohde, Peskind, and

Raskind (1995) note two suicides following the disclosure of a dementia diagnosis. Other

studies are equally concerned about the more common occurrence of depression as a

result of disclosure (Rice & Warner, 1994; Smith and Beattie, 2001). Others contend it is

also the patients right to not know their diagnosis (Downs, 1999).

Others oppose disclosure of diagnosis for reasons external to the patient. For

example, some physicians feel they have little to offer a patient (Wolff, Woods & Reid,

1995), as there are few treatments and no cure. Similarly, many physicians see disclosure

as futile where impaired cognitive ability limits understanding of the disease. It is also

difficult to provide an accurate prognosis (Molloy & Caldwell, 1998).

Another external factor is the request of a caregiver or family member who asks

the physician not to disclose the diagnosis (Kirby & Maguire, 1998). In a 1994 survey of

British Columbia Family physicians, Bell-Irving, Donnelly and Berkowitz found that

86% of physicians agreed with the following statement: “although people differ in their

ability to accept the diagnosis, in most cases they should be told what the diagnosis is,

and what the future may hold”. Only 73% of caregivers surveyed agreed with the same

statement (personal communication). Smith and Beattie found some family members

requested the patient not be included when the diagnosis was reviewed in a recent British

Columbia Study (2001). The above-noted studies reflected the commonly protective

attitude of the family members and caregivers toward the patient (Rice& Warner, 1994).

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This sentiment was confirmed by a 1996 study by Maguire, Kirby, Coen, Coakley,

Lawlor and O’Neill, showing 83% of family members said they would want a dementia

diagnosis withheld from their relative. Yet, when asked if they themselves would like to

be told their diagnosis, 71% said yes. Even among respondents, a certain inconsistency

appeared, as the issue of disclosure is complex.

Those in favour of disclosure root their arguments repeatedly in the autonomy of

the individual. This ethical principle is a primary value held by the World Medical Health

Association (2002) in their Charter of Medical Profession (accessed from

http://www.crp.org/library/ethics/geneva on April, 2004). The proponents of disclosure

highlight the right of patients to know and to make decisions about their future. Choices

about advance directives, power of attorney, and treatment and research opportunities can

only become available once a diagnosis has been provided. The Canadian Consensus

Conference on dementia (Canadian Medical Association 1999) holds this value in

relation to dementia disclosure, representing it as the appropriate ethical choice (Canadian

Medical Association 1999, S7). Smith and Beattie (2001) conclude disclosure of

diagnosis is generally beneficial, but people require some assistance with interpretation of

the information given.

Other researchers agree that information, resources and treatments are

opportunities lost without disclosure. Iliffe, Walters and Rait note Levin's research

findings: "Early diagnosis is also important because it allows for individuals and carers

[sic] to be informed, and to be introduced to appropriate agencies and support networks

which can relieve the disabling psychological distress that carers[sic] can experience (as

cited by Iliffe, Walters & Rait, 2000, p. 286).

Yet others in favour of disclosing a diagnosis recognize the advances of

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pharmaceutical treatments that can delay, although temporarily, the progression of the

symptoms and provide a delay of six months and in some cases longer (Lanctot,

Herrmann, Yau, Khan, Liu, et al., 2003).

While the debate concerning disclosure to patients lacks consensus, there is much

more agreement about caregivers’ access to the same information. One United Kingdom

study by Rice and Warner (1994) noted there was a significant difference between the

practice of disclosing a prognosis and diagnosis to a caregiver as opposed to the patient.

Almost 100% of caregivers were given the patient’s diagnosis, compared to 40% (mild

diagnosis) of the respondents who answered "almost always tell", 15% (moderate

diagnosis) of the respondents who answered "almost always tell" and 7% (severe

diagnosis) of the respondents who answered "almost always tell". Subsequently,

Fortinsky, Leighton,and Wasson (1995) reported 53% of primary care physicians would

disclose a diagnosis of mild dementia and 55% moderate dementia to a patient. They also

noted 90% of respondents indicated they would disclose the diagnosis to a caregiver

regardless of the severity of the disease. Even more recently, in 2001, Rae, McIntosh, and

Colles looked at the same issue and found 70% of G.P.'s disclosed a diagnosis to patients,

while 99% disclosed to caregivers. Researchers of disclosure practices among primary

care physicians consistently find more frequent disclosure to caregivers than to patients

themselves.

Primary care physicians’ choice to disclose to caregivers more than patients

alludes to a decision-making process which uses some rationale about their policy in

disclosure practices. This is accounted for in one line of questions asked by Dr. Oken

(1961) in his study of physician's disclosure practices with cancer patients. Dr. Oken

surveyed 219 physicians at a teaching hospital in Chicago. He examined, among other

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factors, the following: (a) factors involved in disclosure with a particular patient, (b) the

sources from which the policy had been acquired, (c) the role of personal emotional

factors and (d) personal choice. Dr. Oken found

Although clinical experience was cited by three-quarters as the major policy

determinant, the data bear no relation to experience or age. Instead

inconsistencies, opinionatedness, and resistance to change and to research were

found which indicated emotion-laden "a priori" personal judgments as real

determinants. Feared reactions to telling (e.g. suicide) could rarely be

substantiated, equally undocumented assumptions were give and justification for

telling. Underlying were feelings of pessimism and futility about cancer (p. 86).

These conclusions have been cited to draw attention to the similarities between cancer

and dementia in much of the previously noted research. The cancer studies have

influenced the hypotheses for dementia disclosure practices in this study.

Drickamer and Lachs (1992) criticize the common comparison between cancer

and dementia; pointing out the notable difference in capacity for understanding between

dementia patients and cancer patients. Cancer patients are much more likely to retain the

ability to process diagnostic information throughout the course of the disease. So, while

many studies have looked at the similarities between influences similar to cancer and

dementia diagnosis practice, not all research supports the comparison. With that said,

many characteristics are similar and the factors that have influenced disclosure in cancer

(Novack, Plumer, Smith, Ochitill, Morrow & Bennett,1979) are recognized as influential

to disclosure practices with dementia patients.

The age of the physician has been recognized as a factor in disclosure practice.

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One study by Fortinsky, et al. (1995) concluded that physicians in practice five years or

less were more likely to disclose to the patient. Another study by Downs, Cook, Rae, and

Collins (2000) confirmed these results when they concluded younger physicians disclosed

dementia more often.

Training is assumed to be an important factor in how physicians decide upon their

policy of dementia disclosure. Dr. Martha Donnelly, Director of the Division of

Community Geriatrics Department of Family Practice and Director of the Division of

Geriatric Psychiatry, Department of Psychiatry, University of British Columbia advised

students could be exposed to dementia disclosure training in clerkship, family practice

residency, continuing medical education or through

personal interest i.e. reading (personal communication). Angela Towle, Associate Dean

of Curriculum said medical curriculum regarding disclosure the University of British

Columbia may be addressed in the context of ethics training (personal communication).

The current curriculum design means a medical student could graduate without any

specific training in disclosure of dementia diagnosis.

Vassilas and Donaldson (1998) found the three most important factors influencing

a physician’s decision to disclose were diagnostic certainty, patient’s request for a

diagnosis and the emotional capacity of the patient. Johnson, Bouman,and Pinner, (2000)

concluded insight of patients, desire to be told the diagnosis, stage of the disease and

diagnostic certainty were the most important factors influencing their decision to disclose

a dementia diagnosis. There are clearly similarities in the factors to influence disclosure

practices with cancer and dementia patients.

The factor that has not been discussed in the dementia literature is the legitimacy

of physicians using personal experience to influence their disclosure practices. 'A

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priori' knowledge is noted in both Oken's (1961) and Novak's (1979) studies on cancer

disclosure practices. Oken concluded in his original study that physician's disclosure

policies were based on "...a priori personal judgements....", and not on clinical experience,

as was cited by three quarter of respondents (p.86). Novak’s (1979) follow up study

concluded that while there was a distinct and significant shift in the practices of

physicians to disclose to cancer patients, their reasons for doing so remained the same.

Practice was based on physicians’ individual values.

These authors criticize the legitimacy of 'a priori' knowledge in cancer disclosure

practices. They claim they found a difference between the perception of the physician's

policy on disclosure and the reality of their attitudes towards it. Yet, there is no

disagreement that disclosure is largely an ethical issue, and as such, requires some

rational thinking in considering any such decision. As mentioned earlier, the Canadian

Consensus Conference on Dementia (Canadian Medical Association 1999) noted that

while disclosure was the appropriate ethical decision, each situation needed to be

considered individually (S7). So how do personal values and the ability to make ethical

decisions complement one another, and to what degree?

This discourse about knowledge has been debated by some of history’s greatest

minds. Rene Descartes, the sixteen century French philosopher, believed the essential

source of knowledge was based in more than observation and that some knowledge

existed 'a priori', or independent of, experience or science (Gould, 1985). It was in the

eighteenth century that Immanuel Kant attempted to reconcile these two views (Gould,

1985). Kant felt these parts of knowledge, rationale, and empiricism were intertwined

with one another in so far as judgment is dependent on experience and experience is more

flavourful with each person's sense of meaning or judgment of it (Gould p. 259).

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Therefore, a disclosure practice based on a complement of scientific data and a person’s

view of what makes the data meaningful or ethical provides for a greater sense of

knowledge and practice.

Ethical Decision Making

Wulff offers a structure of ethical reasoning in his book called Rational Diagnosis

and Treatment: An Introduction to Clinical Decision-Making (1981).

He goes on to say that ethical reasoning requires physicians to balance three positions: (a)

what is most useful for their patient at that time, (b) what is most useful for the patient's

general wellbeing if each physician adopted the same course of practice, and (c) what is

most useful for the future patient and profession as a whole. In doing so, the physician

considers the outcomes from each perspective. It is understandable that a physician could

be challenged by dementia disclosure when the consequences of a decision focused upon

principles of "do no harm" result in a different outcome than a decision based on "patient

autonomy".

Medical associations exist to support physicians and foster integrated medical

practice. One of the greatest ongoing challenges for physicians is how to balance

increasing demands with changing resources, new diseases, and new treatments.

Physicians need to prioritize their responsibilities, ensuring each patient is cared for

adequately.

I suggest that the focus of applied ethics has shifted with changing circumstances

over time. While ethical principles are usually considered in the context of daily practice,

the introduction of diseases such as SARS have shown us how physicians and

administrators prioritize competing ethical principles in their attempts to manage

healthcare in the larger sense. For example, if Canadian officials were unable to contain

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the spread of SARS, many additional resources would have been pulled from other areas

of healthcare to meet the larger communities’ needs over the needs of the individual. The

prioritization of service and resources to address the needs of SARS patients and the

larger community was relatively short in comparison with other shifts that have occurred

over greater periods of time.

The ethical principle of patient autonomy has, over many years become a priority

in healthcare. Physicians in the 1960’s were considered scientists and their approach to

patient care was secondary. The significant shift in cancer disclosure practices is an

example of how practice can change, despite unchanging ethical principles. Humanistic

dementia disclosure practices have lagged behind those of cancer. However, as noted in

the research, it has now has become a priority.

While much attention has been given to dementia disclosure, I believe few studies

have assessed practice from a purely ethical perspective. It seems clear that ethical

decision-making is at the root of the factors influencing practice in cancer and dementia

studies alike, and deserves further research. Perhaps additional studies can further clarify

the complex issues in disclosure research.

It is clear that the debate about dementia disclosure practices remains unresolved.

Despite the ongoing controversy about which practice is best, which factors are most

influential, and whose interests should be considered first: the decision of primary care

physicians to disclose or not appear to be motivated by a common effort to be ethical, and

to consider the quality of life of people with dementia and their families.

Conceptual Models

The psychological models presented in this section were chosen because of what

they contribute to our understanding of the dementia patient. The underlying assumption

13

of all the theories presented is that people continue to develop and are motivated to

improve regardless of their stage of life, circumstances, or illness. While some people

with milder forms of the disease have less obvious impairments, all patients need to be

seen as people first.

Human development theories are based in assumptions of growth and maturation.

Even in later stages of life, most people are able to learn even if the rate of growth

decreases. This growth is compromised to varying degrees for patients with dementia.

Even so, each person experiences impairments in different ways. It cannot be assumed

that all growth stops for dementia patients, at least until the final stage of the disease.

It is important to consider people with dementia as a person first: a person with

limitations and on whom the effects of their environment may have either a positive or

negative impact. Holmes and Rahe (http://www.covenanthealth.com/aboutus/pbh/pbh-

lifechange.cfm) identified common stressful life events that impact healthy functioning

throughout life. Death of a spouse, death of a close family member and personal injury or

illness is listed within the top five most stressful events. At an older age people, including

many with dementia, often experience such stressors. These authors indicate personal

resources such as coping ability, sense of personal coherence and social competence all

mitigate stressful experiences. While people with dementia may experience impairments

in their personal resources, a humanistic approach would support creating an environment

where life is predictable and simplified, creating meaningful social environments and

exposing people to meaningful experiences such as religion.

Erik Erikson’s developmental theory covering the lifespan is divided into eight

stages to be mastered consecutive (Savimaki & Stenbock-Hult , 2000). The underlying

premise is that development is a social process and is available through interaction with

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others. The last life stage noted is called ‘Late Adult’, and the challenge at this stage is to

develop integrity, or find oneself in despair. Erikson identifies that a person has

successfully resolved this stage of life when they develop a sense of wisdom- informed a

detached concern with life itself in the face of death itself‘(as cited by Savimaki &

Stenbock-Hult, 2000).

The contribution for application to the issue of dementia disclosure is to identify

the continuum of experiences a person may have in the late stage of their life span. The

person with dementia may experience loss of integrity if success has been achieved and

then compromised. The greater contribution may be in the assumption that development

is a social process and that people with dementia, caregivers and professionals contribute

to the degree of the experience constructively or negatively.

Carl Rogers agreed that a person’s environment was influential to their well-being

(Kirschenbaum, 2004). More so, Rogers, one of the first “humanists”, was confident that

people’s view of the world was their true perception, that people moved towards

maturation and growth beyond adjustment, and that human characteristics such as

freedom to choose, individual will, feelings and goals were central qualities of

personhood (Kirschenbaum, 2004). These characteristics of personhood also exist for

people with dementia. Communicating the worth of the person with dementia, through

positive regard and unconditional acceptance despite limitations in health or cognitive

abilities, was possible through the therapeutic relationship. As such, physicians have a

therapeutic role to play in their approach to disclosure.

This person-centred approach was championed and specifically applied to

dementia by the late social psychologist Tom Kitwood, who felt that a purely medical

response to dementia was insufficient (Adams, 1996). Kitwood felt psychological factors

15

contributed to the development of dementia. “Kitwood argues the extent of a person’s

dementia is not only dependent upon the extent of the brain damage but upon various

factors including personality, biography, neurological impairment and social psychology”

(Adams, 1996 p. 949).

Based on observations and information provided by caregivers, Kitwood felt

crucial life events such as rejection or disgrace, retirement, major physical illness could

exacerbate the development of dementia (Adams, 1996). Kitwood went even further,

acknowledging the contributions of each member of society in so far as people

discriminate and treat people with disabilities differently. Kitwood names the accepted

characterization of dementia as the ‘existing paradigm’. He says there is a moral vacuum

that exists in the understanding of dementia and the practices of primary care. His

criticism is that in accepting the medical presentation of dementia, it excludes the

consideration of psychosocial and sociological approaches to patients with dementia.

A critical approach highlights the power differential between the physician and

the patient and focuses on the absence of a cure and the limits of psychosocial

approaches. Kitwood’s criticism of patriarchal systems marries with the humanistic

values of person-centred theory (Adams, 1996). In fact, Wulff (1981) even acknowledges

in his discussion of rational decision making that the patriarchal approach is outdated .

Kitwood (Adams, 1996) draws the communities’ attention beyond medical

explanations to reframe dementia care. In doing so, he criticizes the existing approaches

to dementia care and more importantly contributes a new way to see dementia. He

presents it as an integrated and malleable condition that affects, and is the responsibility

of, all citizens, caregivers, and professionals. The social interaction premise underlying

Erikson’s theory is relevant and applied here in Kitwood’s approach.

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Specifically, Kitwood supports values which focus attention to the person and

notes that people with dementia do not have a voice in dementia research (Adams, 1996).

Woods (1999) also notes that patients are underrepresented in the research. This theme

continues to be documented in 2004 as Bamford, Lamond, Eccles, Robinson, and May, et

al. in their systematic review of the literature on disclosure practices notes the absence of

studies representing the voice of dementia patients.

Policy Implications

The Canadian Alzheimer’s Society amended their ethical guidelines regarding

disclosure of dementia diagnoses, in April, 2003, calling for physicians and others to

disclose diagnoses to patients in an accurate, consistent, and compassionate manner

(Alzheimers Society, 2003). Policy statements like these have become more common

around the world, as studies continue to identify irregular disclosure practices by primary

care physicians (Bamford et al., 2004). Similar guidelines are being adopted by

associations and government bodies as recognition of the aging population and the

increasing incidents of dementia are identified. In many cases, dementia strategies have

been developed in order to establish a process for managing the impact on communities.

In Canada, only two provinces are without a dementia strategies; British Columbia is one

of them (BCMA, 2004).

Most provinces have established a formal process to consult with those involved

in and affected by dementia care. Physicians, patients, Alzheimer Associations, medical

associations, researchers, caregivers and long term care administrators, among others,

have been brought together to establish the needs and requirements essential to an

effective dementia strategy. Each process has been somewhat different and has resulted in

a dementia strategy that responds to the specific needs of individuals in each province.

17

Similar to British Columbia, Ontario has a large urban population, concentrated in

the southern part of the province. It also is home to many small communities who have

varying needs. The Ontario Strategy for Alzheimer Disease and Related Dementias was

presented in 1999 and was the first dementia strategy in Canada (Government of Ontario,

2003). The government of Ontario committed 68.4 million dollars over five years to

address the communities’ needs relating to dementia. This strategy consists of a ten point

action plan addressing issues of staff and volunteer training, short- and long-term care,

public education, access to specialists, supports for caregivers and patients and ongoing

research.

Alberta shares the border with British Columbia and as well as some similar

geographical and regional issues. In 2000, the Alberta Government released their more

generic health strategy called Strategic Directions and Future Actions: Healthy Aging and

Continuing Care in Alberta (Government of Alberta). This document consists of a nine

point plan to provide care to the elderly. One of the nine points specifically addresses

dementia care. The report addresses “…education and training, support for caregivers,

development of supportive housing models and residential centres designed for dementia

clients, and supports for long term care centre to meet the needs of residents with sever

Alzheimer’s Disease and dementia” (p. 9).

While provincial governments are attempting to address chronic illnesses such as

dementia, the larger policy issues have examined the current medical system and its

viability in its present state in Canada. In a recent edition of Canadian Psychology

(August 2004 p. 239-243), Roy Romonow, former premier of Saskatchewan and former

chair of the Commission on the Future or Health Care in Canada along with Gregory

Marchildon, Former Executive Director of the commission on the Future of Health Care

18

in Canada, respond to three articles written about the transitions of the health care system

and the possible role of psychologists. Romonow and Marchildon acknowledge that the

system designed in the 1960’s does not meet the current needs expressed by Canadians

and could be improved with an expanded role of psychologists in addressing needs of

people with mental and physical health issues.

Without a doubt, the legacy of Medicare is associated with some important

institutional rigidity, including the physician-centred nature of the system. We

agree with Arnett et al. that, with a broadening of their training and education,

psychologists can play a vital role in transforming primary health care, illness

prevention and health promotion, and the treatment modalities for chronic mental

and physical diseases (p.239).

The dementia care initiatives are moving in the same direction as those suggested by

Romonow and Marchildon, in that they maintain the best of current car practices while

cultivating a more patient-centred approach.

While this study is focused on the role of primary care physicians and their

dementia disclosure practices, there may be a time when administering care for people

with dementia and their caregivers will be achieved through partnership with non-medical

professionals.

This partnership with psychologists and others may be especially helpful to people

who are receiving a diagnosis of dementia because of the multifaceted nature of the

disease.

While some experts in health psychology are waiting at the door hoping to

contribute as partners with primary care physicians, the present structure of health care,

excludes psychologists as publicly- funded professionals recognizing counselling as a

19

privately accessed resource. The existing physician-centred approach that has been

maintained by other provinces in their dementia strategies is also the basis of British

Columbia government as they work towards their own dementia strategy.

The effective implementation of a dementia strategy in BC requires information

on current practices and needs to guide planning and innovation. Disclosure is an

example of an area where concerns addressing patient-centred approaches can be

workable, sustainable and affordable in the evolution of health care reform.

Research Focus and Tentative Hypotheses

To date, there are few designated dementia resources in British Columbia, despite

the increasing numbers of patients who require specific care. The British Columbia

Medical Association (BCMA) indicates the fastest growing part of B.C.’s population are

those 85 years and older (Dementia Strategy Report, 2004 p. 5). This is notable, as almost

one third of people in this age group have dementia. Given that systematic research into

physician practices having to do with the disclosure of dementia diagnoses is quite rare,

the establishment of basic descriptions of current practices are very helpful.

Beginning to define best practices in dementia diagnosis called for documentation

of what practices exist in dementia care in B.C. The formulations of preliminary

hypotheses were based primarily on conceptual and policy principles because empirical

evidence is largely lacking. A survey of primary care physicians in BC was conducted to

establish some such beginnings. Exploration of the survey data will focus on four main

areas: what are B.C. physicians current practices of disclosure of dementia diagnoses, the

perceived influences on BC physician’s practices of disclosure, to whom the doctors

reveal the diagnoses, and the impact of the traditional medical training system. The

analysis of the survey responses will emphasize descriptive strategies to examine the

20

results. This is based on previous literature that has taken a similar approach (see

appendix A for a listing of survey questions).

More specifically,

1. I expect to find, in the survey results (question 18) that the modal physician’s practice

is to disclose a diagnosis to the patient in over 75% of their cases.

2. I expect to find, in the survey results (questions 5 & 18), the longer the physician has

been in practice the less likely they are to disclose a diagnosis to a patient.

3. I expect to find, in the survey results (question 19), a higher proportion of family

members are told, compared to the proportion of patients who are told.

4. I expect to find, in the survey results (question 20), that when ranked, clinical

experience, CME and non-professional experience have influenced their typical

approach to disclosure over medical school training and residency.

5. I expect to find, in the survey results (questions 5 & 12), that physicians in practice 10

years or less and trained in the UK will disclose more often than physicians from

other jurisdictions.

6. I expect to find, in the survey results (questions 18 & 21), that certainty of diagnosis

of dementia, cognitive status of the patient/stage of the disease, request of a caregiver

and personal experience will be more influential than the remainder of the noted

factors.

7. I expect to find in the survey results (questions 17 & 18), non-disclosing physicians

will report lower confidence in their skills for dementia diagnoses when compared

with disclosing physicians.

8. I expect to find in the survey results (questions 18 & 21) Non-disclosing physicians

will report less importance for all factors influencing disclosure when compared with

21

disclosing physicians.

CHAPTER 3: METHOD

Participants

The participants were a randomly selected from the 4500 primary care physicians

who are members of the British Columbia Medical Association. Over 95% of physicians

in B.C are members of the association. Almost 25%, or 1000, of primary care physicians

were mailed surveys. Three hundred and thirty-five responses were mailed back. Twenty-

three were scratched because surveys were either returned blank or were returned from

members who functioned in another capacity such as an administrator. Three hundred and

twelve responses were used for the survey. Three questions had slightly over 5 % of the

data missing. In two instances the question asked respondents to evaluate their training in

residency. One question, regarding general practice, had 38% of the data missing. The

remainder of questions was answered by the respondents.

Over 46% of physicians surveyed work in large Urban (over 75,000) settings in

British Columbia. Over 65% of physicians surveyed care for 1000 or more patients. Over

54% of physicians surveyed work in group practice. Nearly 35% of physicians surveyed

care for 1-10 patients with dementia. Over 75% of respondents attended between 1-10

hours of dementia related CME training in the past five years. Approximately 80% of

physicians surveyed completed their residency in Canada and over half of those in British

Columbia. Gender and age were not requested of the respondents.

Metro, rural and urban physicians’ opinions about diagnostic disclosure were

22

requested, in addition to general information about their practices when dealing with

dementia patients (Appendix A). Physicians were randomly and anonymously selected

from the BCMA database of physicians. The identity of survey respondents were kept

confidential and each survey was assigned a code number for analysis purposes.

As an incentive, all respondents were offered a chance at winning one of three,

$100 Future Shop gift certificates. While this research focused on the issue of disclosure

practices of primary care physicians the broader information gathered was used by the

BCMA in an in-house report (British Columbia Medical Association, 2004).

Analysis

The results were analyzed with a variety of statistical procedures including:

Univariate Descriptive statistics (including frequency tables and percentages), Bivariate

statistics (cross tabulations, Chi square and t-tests), and Repeated Measures and Manova

calculations.

23

CHAPTER 4: RESULTS

Preliminary/Descriptive Analyses

Analysis of the survey data is focused on four main areas: Firstly to describe the

practices of British Columbia primary care physicians in disclosing dementia diagnoses,

secondly, to identify correlates of physician proclivities to disclose a diagnosis, thirdly, to

describe physician’s practices surrounding dementia diagnosis and finally, to summarize

physician viewpoints on dementia-related training.

Hypotheses

In the first hypothesis, I expected to find that the typical physician’s practice is to

disclose a diagnosis to the patient in over 75% of their cases (question 18) in appendix A.

The results support this hypothesis, χ2(3) = 153.5, p < .001, N = 281 . The majority of BC

physicians (59%) report disclosing a diagnosis to patients 75% - 100% of the time, and

this proportion shows a clear, statistically significant preference for physicians to disclose

frequently. The responses also show that 41% of physicians disclose a diagnosis less than

75% of the time.

According to hypothesis two, I expected to find the longer the physician has been

in practice the less likely they are to disclose a diagnosis to a patient (questions 5 & 18).

The analysis was done with a Chi-Square-two way tables and the results supported this

hypothesis, χ2(3) = 1064, p < .005, N = 281. The physicians who have been practicing

more than 20 years tended to disclose dementia diagnosis less frequently, while

physicians in practice less than 20 years tended to disclose dementia more frequently.

In relation to hypothesis three, I expected to find, in the survey results a higher

proportion of family members are told in comparison to the proportion of patients who

are told (questions 18 & 19). The analysis was a Chi-Square goodness of fit. X2 = 99.0

24

(1), p <.001, N = 280 and the results supported the hypothesis. Physicians are more likely

to disclose to family members than to patients.

In the fourth hypothesis, I expected to find, in the survey results, that rankings of

the importance of experiences and training in shaping dementia diagnosis practices would

be associated with frequency of disclosure to patients (questions 18 & 20). Clinical

experience, continuing medical education (CME) and non-professional experience have

influenced physician’s typical approach to disclosure over medical school training and

residency.

Over 50% of physicians rated clinical experience as the most important training

experience influencing their policies towards disclosure. Approximately 30% of

physicians rated continuing medical education as the most important training experience

influencing their policies towards disclosure. A notable result is the association of non-

professional experience with disclosure to a patient. ρ (268) = .23, p < .001, N = 270.

There is a significant correlation between frequency of physicians’ disclosure to patients

and the rank of non-professional experience among important influences on disclosure

practices. There are a relatively high number of doctors who made fewer disclosures to

patients who gave high rankings to the importance of non-professional experience. In

these instances the primary care physicians gave a higher priority to non- professional

experience as a basis on which they decided to disclose dementia diagnoses less often.

High rankings of non-professional experience are associated with disclosing to patients

less often.

Another significant result ρ (273) =.123, p < .042, N = 270 on the issue of medical

school. Physicians who ranked medical school as important tended to disclose less often.

Although not significant, a trend did appear for physicians who said medical school was

25

less important in their decision to disclose a dementia diagnosis to their patient and more

important in their decision to disclose a diagnosis to the family.

Hypothesis five: I expected to find that physicians in practice 10 years or less and

those physicians trained in the United Kingdom would disclose more often than

physicians from other jurisdictions (questions 5, 12 & 18). The results confirmed that

those in practice fewer than 10 years do disclose more often. T-test = 2.2478, df = 89.948,

sig (2 tailed) = .015. In regards to the disclosure practices of U.K. physicians, the results

were significant. In fact there was a significant result with the Mann Whitney non-

parametric analysis. X2 = 2326, p <.013, N = 305. Contrary to hypothesis, these results

indicated that those who were trained in the UK medical schools were less likely to

disclose a dementia diagnosis to patients.

In hypothesis six, I expected to find in the survey results that four factors;

certainty of the diagnosis, cognitive status of the patient, the request of the caregiver and

personal experience would be more influential to a physician than insight and emotional

status of the patient, the request of a patient and medical treatment planning (question

21). There was a significant result using repeated measures ANOVA. F = 47.6, df = 5.1, ή

= .147, p < .001. The results were significant showing that the physicians, overall, rated

the different factors at different levels (see figure 1).

The results identified two clusters of factors. The majority of the factors, five,

were found to be highly influential while two factors were seen to be less influential by

physicians. Certainty of diagnosis, cognitive status of the patient, and the request of the

caregiver were factors found in the highly influential cluster as predicted in the

hypothesis. Personal experience was found in the cluster of factors with low influence

and this result did not support my hypothesis. In addition, insight and emotional status of

26

the patient and the request of the patient were found to be highly influential factors.

Medical treatment planning was found as having low influence on physician’s decisions

to disclose a diagnosis to the patient.

According to hypothesis seven, I expected to find in the survey results, those

physicians less likely to disclose will also report lower confidence for each skill than

physicians who are more likely to disclose (questions 17 & 18). There was a significant

result for a mixed design ANOVA. The interaction between the level of disclosure and

the kind of clinical skills required to care for dementia patients shows that low disclosure

physicians report the least amount of confidence in their communication of dementia

diagnosis with patients compared to high disclosure physicians. There is a mean

difference between some of the confidence levels reported by physicians. The results

clearly show that physicians feel a difference in confidence among various skills used

with dementia patients (see figure 2). Those who disclose less often tend to have less

confidence about disclosure of dementia diagnosis. F = 3.798, df (5)(265), p < .002, eta2 =

.067.

In the eight hypothesis, I expected to find in the survey results, those non-

disclosing physicians will report less importance for all factors influencing disclosure

when compared with disclosing physicians (questions 18 & 21). There is a significant

result using a mixed design ANOVA. The mean difference between the level of

importance given to various factors by physicians was significant, as noted under

hypothesis 6. There was no overall difference in ratings for the factors influencing

disclosure to patients between low disclosure physicians and high disclosure physicians.

However, an interaction between the level of disclosure and the importance of factors

affecting disclosure identifies that the hypothesis was supported only for the factors of

27

medical treatment planning and insight and emotional stability of the patient F = 2.846 df

(6)(255), p < .001, eta2 = .063.

Summary

Three hundred and twelve primary care physicians answered a survey about

dementia practices in BC. The information reported speaks to how physicians

communicate a diagnosis of dementia to patients and their family members and the

influences of various factors. We now can say the majority of BC physicians (59%) report

disclosing a diagnosis to patients 75% - 100% of the time. This proportion shows a clear,

statistically significant preference for physicians to disclose frequently however it also

means that 41% of physicians disclose a diagnosis less than 75% of the time.

Physicians who have been practicing more than 20 years tend to disclose dementia

diagnosis less frequently than physicians in practice less than 20 years. Physicians are

more likely to disclose a diagnosis of dementia to family members than to patients.

Clinical experience, continuing medical education (CME), non-professional

experience and medical school training influenced physician’s typical approach to

disclosure over residency. It is notable that a relatively high number of doctors who made

fewer disclosures to patients also gave high rankings to the importance of non-

professional experience. In these instances the primary care physicians gave a higher

priority to non- professional experience as a basis on which they decided to disclose

dementia diagnoses less often. A high ranking of non-professional experience is

associated with disclosing to patients less often. Physicians who ranked medical school as

important also tended to disclose less often.

One of the original hypotheses predicted that those physicians trained in the

United Kingdom would disclose a diagnosis of dementia more often. The data shows a

28

significant result but contrary to the hypothesis. The results indicated that those who were

trained in the UK medical system were less likely to disclose a dementia diagnosis to

patients.

Survey question 18, Appendix A, asked physicians to evaluate the various factors

and how influential they were in their practice of disclosure. Certainty of diagnosis,

cognitive status of the patient, and the request of the caregiver were factors found in the

highly influential cluster as predicted in the hypothesis. Personal experience was found in

the cluster of factors with low influence and this result did not support the original

hypothesis. In addition, insight and emotional status of the patient and the request of the

patient were found to be highly influential factors. Medical treatment planning was found

as having low influence on a physician’s decisions to disclose a diagnosis to the patient.

Physicians were asked to evaluate how confident they felt regarding their skills

with people with dementia. The data clearly indicates that physicians feel a difference in

confidence among various skills used with dementia patients. Those who disclose less

often tend to have less confidence about communicating the diagnosis of dementia to

patients.

While this study does not provide an exhaustive analysis of dementia disclosure

practices, it does provide an ample description of how B.C. physicians communicate a

dementia diagnosis and what is influential in their decision to do so. This study

establishes an important benchmark as the issues related to dementia care for practitioners

and the community are under increased examination.

29

CHAPTER 5: DISCUSSION

Three hundred and twelve primary care physicians currently working in BC were

surveyed about their practices with people with dementia. Of particular interest are

practices surrounding the disclosure of diagnosis to patients and their families. The

typical physician practiced in a metro-urban centre, worked for over ten years, was

trained in Canada, and had some patients who were diagnosed with dementia. The sample

provided a fair representation of the nearly 4500 primary care physicians in British

Columbia.

Hypotheses

The results suggest the following information about the practices of physicians

when diagnosing a patient with dementia. Fifty-nine percent of primary care physicians in

British Columbia disclose a dementia diagnosis to patients in over seventy-five percent of

their cases. While this result suggests that most patients are given a diagnosis, it also

indicates that forty-one percent of physicians provide a diagnosis to their patients less

than seventy-five percent of the time. This means that there is a need to analyze in greater

detail which patients are receiving a diagnosis and why. This statistic about disclosure

gives us a picture of current practice, and sets the foundation for discussion about best

practice guidelines. Establishment of practice guidelines can be useful in standardizing

service, for setting a threshold for under disclosure and for identifying training needs.

The results for the second hypothesis show that those physicians in practice less

than 20 years have received more training about dementia-related issues than in the

previous twenty years. Possible explanations could include: the profile of the disease has

increased significantly in this time frame, more specific training regarding disclosures has

occurred, or there may be an increase in those with specialized training, such as certified

30

family physicians.

As is well documented in the literature, physicians disclose a dementia diagnosis

to caregivers more often than they do to patients. This, too, is the case in British

Columbia. The results of the fourth hypothesis confirmed expectations in that physicians

indicated clinical experience and continuing medical education (CME) were the most

highly ranked influences in their practice of the disclosure of dementia diagnosis to

patients. The notable results suggested that while only slightly significant there was a

group of physicians who disclosed less often and ranked non-professionals experience as

influential of their practices regarding dementia disclosure. High rankings of non-

professional experience are associated with disclosing to patients less often. While this is

not a causal relationship, further investigation may be worthwhile to clarify if non-

professionals experience is exclusively related to physicians who do not disclose.

Interestingly, physicians who ranked medical school as influential also tended to disclose

less often.

The results of the fifth hypothesis show that physicians in practice less than 10

years disclose more frequently than those in practice over 10 years. It appears that fewer

years in practice are associated with more frequent disclosure practice to patients. While

developments in training may account for increased disclosure practice so too might the

ethical focus on autonomy of the patient.

The second part of the fifth hypothesis predicted physicians trained in the United

Kingdom would disclose more often than other physicians. The hypothesis stemmed from

the large concentration of research done in the area of dementia disclosure in the United

Kingdom. The results were significant, but in the opposite direction. It appears physicians

31

trained in the United Kingdom are less likely than those trained in Canada to disclose

dementia diagnoses. Further investigation may reveal this group of physicians were

trained in the past ten, twenty years or trained more than twenty years ago.

The sixth hypothesis examined at how the six noted factors influenced physician’s

practice of disclosure. The results showed that not all factors influenced practices equally.

In fact, two clusters appeared; certainty of diagnosis, cognitive status of the patient, and

the request of the caregiver. These were found as highly influential on the physician.

Personal experience and medical treatment planning were not found to be significant.

Physicians who felt confident of the diagnosis, who felt the patient could understand the

diagnosis or who felt the caregiver would benefit were more likely to disclose.

It appears this choice to disclose is largely dependent upon ethical principles of

beneficence and nonmalificence. Where the physician felt they were certain of the

diagnosis and the patient would benefit, and it was their duty to disclose, and a diagnosis

was given. This is an example of how a physician may balance ethical principles

integrating knowledge, expertise and focusing on each person with unique circumstances.

The results of the seventh hypothesis were interesting in that the interaction

between the level of disclosure and the kind of clinical skills required to care for people

with dementia shows that physicians feel a different level of confidence among various

skills used with people with dementia. Specifically, low disclosure physicians report

lower levels than high disclosure physicians in the area of communicating a diagnosis to

the patient. There was much less of a difference in confidence between disclosing

physicians and non-disclosing physicians regarding other noted skills.

Similarly, it was the interaction effect that best answers the query posed in

hypothesis eight; do non-disclosing physicians report less importance for all factors

32

influencing disclosure than disclosing physicians? The results show there is a difference

between the levels of importance of various factors rated by all physicians. Disclosing

and non-disclosing physicians showed the most consistent practice where there was

diagnostic certainty, when a request for disclosure was made by the patient or the

caregiver, and when influenced by their personal experience. Practice differed the most

when physicians considered the status of the patient, the stage of the disease and issues

surrounding medical planning. It may be that physicians feel they are required to use their

expertise to determine if it is in the patient’s best interest to disclose a diagnosis. It is

commonly understood among experts that people unable to understand their diagnosis

and those who no longer have the capacity to make decisions about treatment are only

confused by or burdened by a diagnosis. If this is true, then, determiners of the threshold

at which diagnostic usefulness is lost become even more important for patients and early

diagnosis should be give greater priority.

In summary, British Columbia primary care physicians have some similar

practices regarding dementia disclosure yet there is inconsistent service provided to

patients across the province. Exposure to up to date training, years in service and factors

specific to patients all affect the practice of physicians. Ethical interpretation is also a

contributing factor.

Future Research and Limitations

Although this study is similar to research conducted in other jurisdictions it adds

to the literature by documenting the practices of physicians in British Columbia. However

the study is somewhat limited because descriptive analyses do not allow for causal

statements or absolute relationships. This study documents disclosure practices from self-

report statistics of physicians. It does not document the perspectives of people with

33

dementia confirming the reports made by physicians. The literature review notes that

there is a need for more research to capture the opinions of people with dementia about

their experience of diagnosis. There is also room for further research in examination of

ethical decision making and how it affects physicians approach to disclosure of dementia.

The survey could have been improved by defining vocabulary such as disclosure

and non-professional experience. Although the disclosure questions were queried in a

section of the survey called “Disclosure of Dementia”, more distinction between

diagnosis and disclosure could have improved clarity for the respondents. More clear

information about the survey population, specifically regarding the make up of the

primary care physicians would also have improved the project.

Policy Implications

The goal of this study has been to describe the practices of British Columbia

primary care physicians and their approach to disclosure of dementia diagnoses. The

literature and the results of this study are consistent and confirm that the dementia

disclosure practices of physicians vary. The literature also speaks to the factors

influencing disclosure to dementia patients and physician’s confidence around

communicating a diagnosis. These elements differ between physicians who disclose and

those who do not disclose. In documenting such distinctions there is a context to discuss

the appropriateness of practice guidelines as it relates to dementia disclosure. There is

also a context to review how changes to the health care system could be resourced.

Alzheimer societies around the world have agreed and established their positions

on disclosure policies. The Canadian Alzheimer Society amended their ethical guidelines

in April 2003 calling for physicians to disclose dementia diagnosis to patients. Such

ethical statements are based in principles of patient autonomy and a person-centred

34

approach to medical decision making and care.

Most provincial governments have recognized the need to address dementia-

related issues beyond disclosure and have funded initiatives to plan for the care of people

with dementia and their families. Physician education, resources and community

infrastructure have all been recognized as essential elements of a strategy to manage the

demands on resource as the population ages and the incidents of dementia increases.

British Columbia has no dementia strategy to date but it is presently considering labeling

it as a chronic disease, such as diabetes, which could largely improve the structure of

health care service available to patients and their families.

Dementia disclosure practices and the growing issue of dementia care is one

example of how a changing population requires an adaptive and efficient health care

system. Issues of dementia were considered largely unmanageable when the basic

structure of Medicare was established. Now, Canadian policy makers are trying to reform

a system designed to address the needs of Canadians fifty years ago, to meet present

needs.

As noted earlier, Roy Romanow, the former chair of the Commission on the

Future of Health Care in Canada and Gregory Marchildon, the former executive director

of the Commission on the future of Health care in Canada acknowledge that changes are

required in order to meet the needs of Canadians (2004). They advocate recommitting the

best elements of our present health care system and adopting innovative and efficient

elements to enhance and improve health care in Canada.

Romanow (2004) acknowledges the physician centred nature of the system may

need to change to allow other professionals, including psychologists, to improve patient

care. For people with dementia and their families such an approach could be very

35

valuable in assisting people with illness to emotionally manage their experience of

hearing their diagnosis and follow up care. Psychologists, among others, have the

expertise to assist people to integrate this information with the practical aspects of daily

living. Disclosing to friends and family, planning for future, addressing long-standing

personal issues, dealing with grief and assisting with coordinating other resources are

some areas which are suitably addressed by a professional with mental health expertise.

Physicians, psychologists and others can work together to ensure gaps in service are

filled. Establishing partnerships is one way in which the larger health care system can

provide a person-centred response to patients with dementia and their families.

Conclusion

The purpose of this study was to describe the practices of British Columbia primary

care physicians and their approach to dementia disclosure. Specifically, it examined

certain factors and the consistency of practice among physicians. The research achieved

its goals in a number of ways. Firstly, this study provides a picture of the approach British

Columbian primary care physicians take towards dementia disclosure to patients; it

identifies the differences in confidence towards skills and influences of factors to

disclosure practices. Secondly, this study has identified there are varied disclosure

practices and suggests that practice guidelines may assist physicians to provide more

consistent care to patients. This study also identifies the need for greater understanding on

how theoretical assumptions and ethical principles are internalized by physicians and the

influences of applied ethics on physician’s approaches to dementia disclosure to patients.

Lastly, in the larger area of social policy, this study notes the present controversy

about health care reforms. From a person-centred perspective this study supports a move

away from the central role of physicians to a team approach of care: a variety of

36

professionals providing for patients physical, psychological and emotional health. This

approach would support an environment where the psychological community could

partner with physicians allowing all to focus on their respective areas of expertise.

Dementia patients are an excellent example of a group of health care users who would

benefit from a team management model of care. As governments struggle to achieve

reforms that meet the needs of users and providers such paradigms should be seriously

considered.

37

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Anniversary of his birth. Journal of Counseling and Development, 82, 116-124.

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Einarson, T.R., (2003). Efficacy and Safety of Cholinesterase inhibitors in

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Alzheimer’s disease: A meta-analysis. Canadian Medical Association Journal, 169,

6, 557-564.

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their diagnosis. British Medical Journal, 313, 529-530.

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APPENDIX A

Survey Questionnaire

46

th, 2003. Please mail the response card separately. Those who complete the survey willbe eligible for a chance to win one of three $100 Future Shop Gift Certificates.

Please direct any questions or comments regarding the survey to Mr. Robert Hulyk,Government Relations Manager, BCMA at 604 638-2883 or [email protected].

6) About what percentage of your patient’s are caregivers for someone withdementia?

a) 0-25 %

47

b) 26-50 %

c) 51-75 %

d) 76-100 %

e) Not Applicable

7) About what percentage of your patients are currently over the age of sixty-five?

a) 0-25 %

b) 26-50 %

c) 51-75 %

d) 75-100 %

e) Not Applicable

8) About what percentage of your patients are currently over the age of eighty-five?

a) 0-25 %

b) 26-50 %

c) 51-75 %

d) 75-100 %

e) Not Applicable

9) About what percentage of your current patients are diagnosed with dementia everyyear?

a) 0-5%

b) 6-10%

c) 11-15%

d) 16-20%

e) over 20%

f) Not Applicable

Due to the growing and aging population combined with the physician shortage in BritishColumbia, a great number of family practices are no longer accepting new patients. Weare interested in exploring how physicians decide to accept new patients, particularly

48

those with dementia.

10) Are you accepting new patients?

a) Yes

b) Yes, with some restrictions

c) No

d) Not Applicable

11) If you answered

15) About what percentage of your training, received at Medical School, was specificallyoriented to dementia?

a) 0-25%

b) 26-50 %

c) 51-75 %

d) 76-100 %

e) I don’t know

16) About what percentage of your clinical experience, acquired during residency, wasspecifically oriented to dementia?

a) 0-25%

b) 26-50 %

49

c) 51-75 %

d) 76-100 %

e) I don’t know

17) Over the past five years how many hours of CME have you taken on dementia?

a) 0

b) 1 -10

c) 11-20

d) 21-30

e) 31-40

f) 41-50

g) 51 or more

18) Over the next five years how many hours of CME do you expect to acquire ondementia?

a) 0

b) 1 -10

c) 11-20

d) 21-30

e) 31-40

f) 41-50

g) more than 50

19) How confident do you feel with your skills in the following areas regardingdementia?

50


on’t Disc

21) On what do you base your typical approach to a dementia diagnosis (Rank thesesources in importance from 1-5.

23) How long do you spend over various appointments, disclosing a diagnosis ofdementia to a patient?

a) I never disclose

b) less than fifteen minutes

c) 16 to 30 minutes

1

1


d) 31-45 minutes

e) 46-60 minutes

f) over 60 minutes

24) How long do you spend over various appointments, disclosing a diagnosis ofdementia to a caregiver?

f) I never disclose

g) less than fifteen minutes

h) 16 to 30 minutes

i) 31-45 minutes

j) 46-60 minutes

g) over 60 minutes

25) Please add any comments you feel are relevant regarding dementia diagnosis and/ortreatment in British Columbia.

Greatest Demand Least Demand

2

2


Dementia care survey

A survey undertaken by the BCMA Council on Health Promotion

September 2003

This should take no more than 15 minutes of your time to complete.

Please mail your survey by October 17th 2003 to ensure you are entered for the prizedraw.

INSTRUCTIONS

1. PLEASE COMPLETE AND RETURN THIS SURVEY AS SOON AS POSSIBLEby mail in the self-addressed stamped envelope provided.

2. Please also return the self-addressed, stamped response cardseparately. We require the response card to ensure that we only follow up withthose physicians who have not yet responded – and to enter your name for theprize draw.

3. Please WRITE CLEARLY and note that the survey is DOUBLE-SIDED.

4. You may encounter questions that are not directly relevant to your own practicecircumstances. Please mark the ‘not applicable’ category in these instances.

5. In order to maintain the confidentiality of your responses, this survey cannot belinked with your name. Thank you in advance for your time.

If, on completion of the survey, you wish to include comments on pertinent issues thathave not been mentioned, please write them out on a separate sheet and enclose with thecompleted survey.

Sincerely,

Dr. Heidi OetterChairBCMA Council on Health Promotion

3

3


- Please circle the most appropriate answer -PRACTICE INFORMATION

1) Please estimate the size of your practice by unique patients:

a) 500 or lessb) 501-1,000 c) 1001-1,500 d) 1501-2,000e) More than 2,000

2) What style of practice do you work in?

a) Solob) Walk in clinicc) Group practiced) Hospitale) Other

3) If you work in an outpatient (community setting) is your care for patients primarilyepisodic or continuing?

a) Primarily episodicb) Primarily continuingc) Equal mix of bothd) Not applicable

4) What size community do you practice in?

a) Rural population less than 25,000b) Urban 25,001 – 75,000c) Large Urban 75,001 +

5) How many years have you been in medical practice since graduation?

a) 0-5 yearsb) 6-10 yearsc) 11-20 yearsd) 21-30 yearse) More than 30 years

6) Please estimate what percentage of patients in your practice are currently over theage of sixty-five:

a) 0-5 %b) 6-10 %c) 11-15 %d) 16-20 %e) More than 20%f) Not Applicable

4

4


7) Please estimate what percentage of patients in your practice are currently over theage of eighty-five:

a) 0-5 %b) 6-10 %c) 11-15 %d) 16-20 %e) More than 20%f) Not Applicable

DEMENTIA IN YOUR PRACTICE

8) How many patients in your care have dementia?

a) 0b) 1-10c) 11-20d) 21-30e) More than 30f) Not Applicable

9) How many new cases of dementia do you estimate you diagnose each year?

a) 0-5 b) 6-10c) 11-15d) 16-20e) More than 20f) Not Applicable

10) Are you accepting new patients?

a) Yesb) Yes, with some restrictions c) Nod) Not Applicable

11) If you answered “yes with restrictions” to question 10, would you accept a patientwith dementia?

a) Yesb) Noc) Not Applicable

5

5


DEMENTIA RELATED MEDICAL TRAINING

We would like to ask you questions about your medical school training,clinical experience and continuing medical education (CME) as it relates todementia.

12) Where did you receive your

a) Medical Degree

i) British Columbiaii) Other Canadian Provinceiii) United Statesiv) United Kingdomv) Other European Countryvi) South Africavii) Other_______________

b) Post-Graduate (i.e. residency) training

i) British Columbiaii) Other Canadian Provincesiii) United Statesiv) United Kingdomv) Other European Countryvi) South Africavii) Other_______________

13) Given your experience, do you believe the instruction you received in medicalschool in the area of dementia was adequate?

a) Yes - Adequateb) Somewhat adequatec) Somewhat inadequated) No - Inadequate

14) Given your experience, do you believe the instruction you received in post-graduatetraining in the area of dementia was adequate?

a) Yes - Adequateb) Somewhat adequatec) Somewhat inadequated) No - Inadequate

6

6


15) Over the past five years how many hours of CME have you taken related todementia?

a) 0b) 1 -10c) 11-20 d) 21-30 e) More than 30

16) Over the next five years how many hours of CME do you expect to spend ondementia?

a) 0b) 1 -10c) 11-20 d) 21-30 e) More than 30

17) How confident do you feel with your skills in the following areas regardingdementia?

VeryConfident

SomewhatConfident

SomewhatUnconfident

Not at allConfident

NotApplicable

Initial diagnosis 1 2 3 4 5Discussing diagnosis/disclosure to patient

1 2 3 4 5

Discussing diagnosis/disclosure to family

1 2 3 4 5

Treatment 1 2 3 4 5Knowledge about supportservices

1 2 3 4 5

Managing behaviouraldisturbances

1 2 3 4 5

DISCLOSURE OF DEMENTIA

Presently, there are no best practice guidelines in BC for communicating a diagnosis ofdementia to a patient or family member. We are interested in your usual practice upondetermining a patient has dementia.

18) If you have determined a patient has dementia, in what percentage of cases do youdisclose a diagnosis of dementia to a patient?

a) 0-25%b) 26-50%c) 51-75%d) 75-100%e) Not Applicable

7

7


19) In what percentage of cases do you disclose a diagnosis of dementia to the family orcaregivers of the patient?

a) 0-25%b) 26-50%c) 51-75%d) 75-100%e) Not Applicable

20) On what do you base your typical approach to a dementia diagnosis (Rank each ofthese sources in importance from 1-5) with a rank of 1 being “very important” and arank of 5 being “least important”. Please use each rank only once (e.g. only one ofthe following items would have a ranking of 1).

Medical School

Residency

Clinical Experience

CME

Non-professionalExperience

8

8


21) Please rate each of the following according to how strongly you feel they influenceyour decision to disclose a dementia diagnosis to the patient (these factors makesdisclosure necessary/advisable):

Factor VeryImportant

SomewhatImportant

SomewhatUnimportant

NotImportant

NotApplicable

Certainty ofdiagnosis ofdementia

1 2 3 4 5

Cognitive statusof thepatient/stage ofthe disease

1 2 3 4 5

Insight andemotional statusof a patient

1 2 3 4 5

The request of apatient 1 2 3 4 5

The request of acaregiver 1 2 3 4 5

Personalexperience

1 2 3 4 5

Medical treatmentplanning 1 2 3 4 5

9

9


22) When you are certain of a diagnosis of dementia, on average how long do youusually spend disclosing that diagnosis of dementia to a patient?

a) 0-5 minutesb) 6-10 minutesc) 11-15 minutesd) 16-20 minutese) More than 20 minutesf) I usually do not disclose a diagnosisg) Not applicable

23) When you are certain of a diagnosis of dementia, on average how long do youspend disclosing that diagnosis of dementia to a caregiver?

a) 0-5 minutesb) 6-10 minutesc) 11-15 minutesd) 16-20 minutese) More than 20 minutesf) I usually do not disclose a diagnosisg) Not applicable

24) How long would you like or think is reasonable to disclose a diagnosis of dementia?

a) 0-5 minutesb) 6-10 minutesc) 11-15 minutesd) 16-20 minutese) More than 20 minutesf) I do not disclose a diagnosisg) Not applicable

25) Following a diagnosis of dementia, how many times in the 1st year do see thatpatient?

a) 0b) 1-5c) 6-10d) 11-15e) More than 15f) Not applicable

10

10


26) Please add any comments you feel are relevant regarding dementia diagnosis and/ortreatment in British Columbia. Please use a separate sheet if needed.

RESOURCES

27) Please rank each of these services by how frequently you use them for your patientswith dementia:

Services VeryFrequentl

y

SomewhatFrequentl

yRarely Not

at allNot

Applicable

Specialists 1 2 3 4 5Laboratory 1 2 3 4 5Diagnostic Services 1 2 3 4 5Regional Geriatric Services 1 2 3 4 5Psychogeriatric Services 1 2 3 4 5Emergency Room 1 2 3 4 5Home Care 1 2 3 4 5Respite Care 1 2 3 4 5Adult Day Care 1 2 3 4 5Home Support 1 2 3 4 5Nursing Home Care 1 2 3 4 5

28) Would you find a comprehensive dementia information and treatment centre (e.g. acomprehensive dementia clinic) useful in your region to assist your practice withpatients and caregivers?

a) Very usefulb) Somewhat usefulc) Very limited used) Not at all useful

11

11


29) From your experience, what additional resources are needed for dementia care andwhere would they have the greatest impact? Please use a separate sheet if needed.

Thank you for taking the time to complete this survey.

Please mail both the survey and response card to ensure you are entered for theprize draw.

Please mail the response card separately.

Thank you for taking the time to complete this survey.

Please don’t forget to mail both the survey and response card to ensure you are entered

for the prize draw.

12

12


APPENDIX B

Figures

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13


1

1.2

1.4

1.6

1.8

2

2.2

Impa

ct o

f Fac

tors

on

Prac

tice

of D

iscl

osur

e to

Dem

entia

Pat

ient

s

Certainty of DementiaDiagnosis

Cognitive Status ofthe Patient

Insight and EmotionalStatus of the Patient

The Request of thePatient

The Request ofthe Caregiver

PersonalExperience

Medical TreatmentPlanning

1

1

Physicians rate how influential seven factors are in their decision to disclose a dementia diagnosis to a patient. The factorswere rated: 1 very important, 2 somewhat important, 3 somewhat unimportant, 4 not important. In hypothesis 6 there was asignificant result as the physician rated the various factors differently. The first 5 factors were found to be more influentialin their decisions to disclose than the final 2 factors.


1.6

1.8

2

2.2

2.4

2.6

Phys

icia

n's

Leve

l of C

onfid

ence

in V

ario

us S

kills

Use

d wi

th D

emen

tia P

atie

nts

High DisclosureLow Disclosure

InitialDiagnosis Disclosure to

Patient

Disclosure toFamily Treatment

2

2

Knowledge AboutSupport servicesManaging

BehaviouralDisturbances

The interaction effect shown here illustrates the differences between low disclosing physicians and high disclosingphysicians and their level of confidence with various skills used with dementia patients. The greatest difference between the2 groups of physicians is in the area of disclosure to patients. The physicians indicated they were: 1 very confident, 2somewhat confident, 3 somewhat unconfident, 4 not at all confident.


1

1.2

1.4

1.6

1.8

2

2.2

Impa

ct o

f Fac

tors

on

Prac

tice

of d

iscl

osur

e to

Dem

entia

Pat

ient

s

Low DisclosureHigh Disclosure

3

3

Certainty of DementiaDiagnosis

Cognitive Status ofthe Patient

Insight and EmotionalStatus of the Patient

The Request of thePatient

The Request ofthe Caregiver

PersonalExperience

Medical TreatmentPlanning

Physicians rate how influential the 7 factors are in their decision to disclose a dementia diagnosis to a patient. The factorswere rated: 1 very important, 2 somewhat important, 3 somewhat unimportant, 4 not important. The interaction effectshown here illustrates the differences between the practices of disclosing physicians and non-disclosing physicians. Thegreatest difference is in the influence of the 2 factors of insight and emotional status of the patient and in medical treatmentplanning.

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